About Me

I am the proud mother of 6 children. 5 of our children have autism. We do not feel our world has ended, but just begun. We do not chelate, intervene biochemically, give shots of any kind, practice ABA, etc.
We treat them as we treat any humanbeing. We treat them with kindness and respect and expect the same from them.
They are exceptional children.

Saturday, July 04, 2009

MY INDEPENDENCE DAY....

I had an epiphany today...A true blue epiphany..

We like to entertain..okay...I love to entertain..it is the caterer in me.We had friends over..a single mother and her two young boys, aged 7 and 11. The 11 year old is quite active and requires some prompts to settle down or stayon task. They have been in our home before, but I never thought to ask the motherwhat "diagnosis" her child had..because, I can pick out Autism anywhere...

I asked the mom..."So, ADHD..."?She said, "No".. I went further.."Aspergers"?Nope...

Finally, this very bright mother said....He's just Johnny !!!! (yes, I changed the name)

Nuff said...

Why the hell have we parents fought for years for a label...when all we could have doneis accept our child for being themselves?....I so get it !!!Why are we trying so very hard for our children to be accepted into a community thatwould probably not accept them no matter what...because perfection is what we areused to wanting...

When I watch Oprah or Larry King Live, and see Jenny McCarthy or the other biomedicalmothers...with the scowls on their faces, because they are so frickin mad at what life hasgiven them...Then, I look over and see the gifts God has given me....I am so thankful I am pass the angerthat autism tried to give me.

So,yes,My kids have a diagnosis of Autism..but,from now on,

They are Caitlin, Deirdre, Erin, Meaghan, Patrick and Kiernan...They are who they are...they will owe no one an explanation..they will owe no one a reason for why they are the way they are...

21 comments:

I do NOT accept the horrible suffering from sleep deprivation and chronic yeast infections that she went through for two plus years that her primary care physician refused to treat. And yes, she did have a yeast infection; you could see that her girl parts and her anus were always angry, red, and inflamed. Her regular doctor flat out refused to treat her, saying that her constant digging in her anus and dragging her butt on the carpet were "stims". She never slept more than two hours straight at night; she had constant night terrors; she had horrible bags under her eyes.

Guess who finally treated her and did the food allergy testing I had been begging her primary care doctor for for years? Guess who prescribed her an oral antifungal that, within three days of taking it, she was finally able to get a good night's sleep? And within three days her eyes were no longer puffy and the change in her physical appearance was so dramatic that every adult in her life commented on it? A GASP - DAN! doctor. I thank God for her every day that she was willing to treat my daughter's physical ailments instead of telling me to "go get therapy and learn to love her". Kind of ironic that shortly after I began probiotics and antifungals and the like that she quit having horrendous tantrums and potty-trained. I suppose she just "matured out of" the bags under her eyes and her red private parts that had been like that for years just magically "got better" and it had nothing to do with that oral antifungal@@.

I am well aware that this stuff is not a "cure". But why the hell does my daughter not deserve to be comfortable and happy? She sure as hell was not comfortable or happy BEFORE we began all the so-called "voodoo medicine".

If your children do not suffer from any type of physical ailments that your regular provider refuses to test for and treat, then count yourself lucky. My daughter does. Yes, she has food allergies. Yes, she had a raging yeast infection that was affecting how she felt. Yes, she has poor muscle tone that was helped immensely by COQ10.

This has nothing to do with "not loving my child for who she is" and everything to do with loving her enough to do whatever it took to help her get a good night's sleep, stop her from constantly whining and itching her privates, even if it meant going to one of those evil DAN! doctors.

You say that biomed moms have been nasty to you. I am genuinely sorry if they have been. I have friends who do not do biomed at all and I have never said a bad word to them about it. But in assuming that we do what we do because we cannot love an "imperfect" child - that is just as bad and you are just as guilty of a sweeping generalization of a whole group of people as the next person.

I am really sick of being told I do not love my daughter because I treated her for a yeast infection. If she were NT and I refused to treat her itchy, inflamed privates I would probably go to jail for neglect. But because she is autistic and I treated this it makes me an unloving parent.

Your children are your children and my child is my child. You did not live in my home all those early years when my daughter's life was a miserable existence. I am only sorry that I listened to people like you and did NOT take her to a DAN! sooner. I refuse to be judged or given that underhanded "you just don't love your baby for herself and that's why you took her to a DAN!" crap that people like you espouse.

Good luck to you. From a former non biomed mom turned biomed mom who loves her daughter heart and soul, even when people like you who have never met us sit behind your own computers and judge us and insist that we do not.

@Navywifeandmom: actually, if your daughter had a raging yeast infection all those years and the MD didn't treat it, he/she SHOULD be reported to his medical board. Yeast infections are easy to identify and treat. My daughters both had yeast infections as young children. Our doctor treated them as soon as I reported the symptoms. You obviously hit a bad apple. I am very sorry your daughter had to suffer and glad you found a doctor who is treating real health issues.

However, no one on this blog, or any blog that I've seen says don't treat obvious health issues like food allergies, yeast infections (real ones like you are describing), GI issues or whatever. Treating true health issues needs to be done. Treating artificial issues (heavy metal poisoning from vaccines) only harms the child.

Well, one of the main reasons any sane parent would want an accurate disgnosis is so the child could get the educational services which they are entitled to. If this mother refuses to do that and insists that he s just "Johnny" when he really needs intervention (such as speech or OT) then she is an irresponsible, ignorant parent in my opinion.

I'm sorry you had a bad doctor and that your daughter suffered because of that. That's not acceptable. And I'm glad you found a doctor who has helped treat the yeast infections.

But you're letting your anger cloud your reading of this blog.

Anonymous, refusing to share a child's diagnosis with someone else doesn't mean the child hasn't been diagnosed and isn't receiving appropriate intervention. It means it's no one else's business. My husband, when he takes our son places, refuses to explain that he has autism. He figures it's none of their business or they'll figure it out. Either way, he's going to give our son the chance to be seen as himself before his diagnosis is known.

I agree 100% with "anonymous". I would also propose that saying "it's just Johnny" is a very nice way to deflect a conversation that you had just made clinical by asking (pressing seems like?) about the diagnosis (surprising in fact, considering your all-inclusive views). If "Johnny" has a diagnosis that requires intervention (and which for sure doesn't take away his "Johnny-ness", BTW, just gives him some problems to work on)- then I bet any reasonable mom would seek out appropriate labels and treatments. Wouldn't you? (or rather, didn't you?)

And- I'm not sure about the "no explanation required " part. I think it really depends. I'm guessing some explanation is reasonably needed , when you expect the school to provide aides, therapies, social groups etc. Or when you expect to get services paid for. Or when you have to explain to someone why your 10-year old with autism has just hit them (generic "you", of course). I somehow doubt that those doors would open up because someone is "just Johnny".

This all being said- I do know typical boys Johnny's age group who are totally normal, yet need tons of prompts to stay on task :).

navywifeandmom, As a matter of fact, our oldest suffered from horrible yeast problems. I read the book "The Yeast Connection" and went to our pediatrician. They prescribed an anti-fungal, Nystatin drops, and lo and behold, she got better. We also visited an allergist for 4 out of 6 of our children. They have food allergies...many children do. Every child deserves happiness.... I NEVER said they did not.

I have been living with an autistic child for 18 1/2 years. I have seen fads come and go. I have been the victim of "snake-oil" and charlatains who are offering us the impossible...a cure.

My oldest is still very autistic, but, she is very functional.

What "chaps my butt" is the fact that an actress (and not a very good one) comes onto the scene and promotes biomedical as a cure for her son, when in fact, her son still has traits of autism. Then, suddenly, we are berated for not curing our children...give me a break.

My youngest is allergic to grass...I give him his antihistamine an hour before he goes outside and ouila...he does not break out. He is allergic to milk..we do not let him have milk. But, he still has autism. He is non-verbal. He is also going into 3rd grade. He is being potty trained and is doing wonderfully. This can be done without at DAN! doctor...really, it can...

I am glad your daughter is doing well...It takes a lot of energy to raise any child, and I know autism can be a huge challenge. I wish you luck and hope she continues to get better...

Lillian, "Johnny" is receiving services. I did not say her wasn't. He just beats to a different drummer, so to speak. The mother, whom I was speaking about in my blog, has a realistic look at her son. He is who he is...but, she is smart enough to know where he needs help. Her kids have never had an immunization in their lives and they are vegans. They lead a very pure life. She just is logical about what her son is..to her..

So you therefore agree that by using "BOI-MED" treatments your children feel better, the autistic behaviours (social, verbal, sensory, aggression, sleeping) are all improved and therefore you children learn better by the use of these interventions.

Therefore.. You're a BIO-MED Mom. If you didn't believe this to be true you wouldn't use the interventions b/c as the LB/RB, Autism Diva, Kristina Chew crowd will tell you these "intolerances/allergies/yeast" don't exist.

What I find upsetting is your attack on the parents. That you attack their fear and claim that you love your children more than they love theirs. What are you ever going to do if you take the car out tomorrow and are killed.... what about those children. What about the fact that 5 of the 6 will probably be scooped up by Children's Aid and tossed in a group home for the rest of their lives.

Do you expect the 1 non-autistic child to look after the other 5 as adults. Why would you ever put that kind of burden on that child. Why is that child not entitled to a life... why is that child expected to live their life for the others??? What happens if the normal child moves away to keep working?? What happens if they become ill?? What happens if they die before the rest?? What happens if the normal child wants to get married and have children??

Why do you expect that employers owe your children jobs?? Employers are in the business to make money... not as unpaid caregivers for your children. Your daughter wants to work in an art studio. How's she going to discuss art with the customers, look after the till, make certain she's not taken advantage of?? Why does an employer have to hire 2 people just to make certain she can manage the job??

That's what these parents realize. They realize that one day whether they like it or not their children will be put into care and ignored and abandonned and there's nothing they can do about it. It's called FEAR. It doesn't make them poor parents just realistic ones.

Until such time the Gov't puts a stop to bio-med treatments they are still legal.

It is not your place nor mine to decide what treatments parents deam appropriate for our children. It's none of our business. Who cares what Jen McCarthy does?? Ranting against them.... doesn't make you a better parent... but it will isolate you in the end.

NavyMom, I got the same BS over the dairy and if it wasn't for Karyn Serrousi - BIO MED MOM - I would not have known to remove the dairy. The rashes, diahhrea, nightmares/terrors all stopped w/in 48hrs.

When your Dev Ped says "some children with autism are like that"... ::eye-roll::

Farmwifetwo... You made me giggle...LB/RB, Autism Diva, and Kristina Chew believe in healing a sick child...however, they do not believe that the yeast would be the cause for Autism....my belief also. Children get yeast infections. My oldest has not had one since she was a baby and we treated with Nystatin through her pediatrician. I do not attack parent's. That is your perception...not mine. I NEVER claimed I love my children more than anyone loves theirs..that is stupid !!! As to the question, what will happen if I die in a car accident (and thanks for the gem of a death for me)..my husband and myself have taken care of our children's needs for their future...thanks for the concern. Children's Aid will not have to be involved at all. My neurotypical child (I do not believe any body is "normal") is looking forward to graduating one day and moving out on her own...but,guess what? So are 3 of my other autistic children. What does that have to do with my NT child? Nothing. As far as my daughter who wants to work in an art studio...she will. She is an honor roll student in regular high school classes in a regular high school. She is verbal and able to communicate with people (much better than you, btw). My daughter can count change..she is a math wizard. Why are you underestimating a person you have never met or had dealings with? Pretty petty of you, don't you think?

What the parents you are talking about realize is that they are buying into the despair and anger that the biomedical community doctors and con-artists want you to buy into....this saddens me. I have said it before...I do not care if you use biomedical interventions...I find it horrible that they would be used on an innocent child... I care what Jenny does...it affects a whole lot of children who do not have a voice in what is being done to their bodies.

Jeanette- if you expect 3 out of your 5 children on the spectrum to live independently of outside assistance (under the form of disability benefits, MCD etc), I want to say that you should consider yourself extremely fortunate. And congratulations on your children's amazing achievements (which are indeed amazing). Just please realize that not everyone is so lucky- as to see their children with autism no longer be held back/weighed down by their neurological problems. For many- not only will they never be independent, but they will demand many sacrifices from their families and help from society.

My guess is that the despair of so many parents has nothing to do with what biomed or Jenny Mc says - but with their realization that there is a much more tragic side to autism, than the sunny version that you like to present. Sky didn't kill his mother because he was "just Sky", but because he had a severely diseased brain due to autism. Nothing positive there.

I don't like Jenny Mc either, BTW and my son hasn't had any dealings with DAN! in ages, so I'm talking general attitude and realism towards what autism is, I'm not commenting on biomed. Often times parents like me who think autism is a neurological tragedy on a child are assimilated with biomed fanatics who seek a cure at any cost, and I wanted to clarify that this isn't my personal vantage point.

Yes, there are some who escape the autism gulag, there are some who are mildly enough affected (either with or without intensive intervention) to where it isn't that big of a problem- but for the ones left behind it's quite a different picture.

Did you know that Johnny was receiving services when you asked about his diagnosis, or did his mom tell you about it, after she said that he is "just Johnny" ?

Also, I hope you don't mind, as the mother of a child with autism to another, I do have a logistical question. You say that Caitlin is still "very obviously autistic", yet you do see her being able to work in a setting where she will successfully communicate with people unaided. My son is also an A-B student on a regular curriculum and does a bunch of typical stuff and is very verbal. Yet, in a setting where people carry on a fairly dynamic conversation he is totally lost- he gets stuck, he can't shift gears, he can't read body language, he is slow in infering, problem solving etc. Typical autistic deficits. Do you not have see these problems in Caitlin (since you say she still had autism related problems) and if so, do you not see these as fairly limiting?

Lillian, I am not the only one expecting three of them to attend college, there are many people who expect it. Deirdre, 15, is already in a college placement program. She is being wooed from many colleges and she is just a sophmore in high school. Erin,12, once severely autistic, now fully mainstreamed (and w/o biomedical btw) will also attend college. She has maintained an A average on her own. Patrick, 9, very much like Erin. They both have sensory issues, but, let's be honest...don't we all?

Lillian, I do not find Autism tragic... That would be a dishonor to my kids.

My blog is my feelings about my children with Autism. It is also a place where I can vent about my feelings about what parent's are putting their kids through on the hope they are cured. I do not mean medically helped with GI issues or yeast for crimony sakes...but cured of Autism...

I do not understand the need to come to my blog and bash me for my thoughts....believe me, I would not return that favor on your blog if you had one.

Jeannette- I am sorry that you are construing what I said as "bashing". Please know that this was not my intention at all- I was simply at first pointing out that there are many other autism realities out there, and then asked a specific question trying to find out your thoughts on how typical autism deficits would marry with gainful employment- these are thoughts that keep many parents awake at night, whether they are biomedders or not. I am very fond of specifics over generalities, hence my curiosity.

Evidently, what I said somehow offended you- again I apologize, and of course, I shall refrain from more comments on your blog.

BTW- I do not have a blog, but if I did you would be more than welcome.

Lillian, I apologize if I took your comments out of context..I am a bit touchy from the other comments. You have always been welcome here and I hope you continue to come and share your comments. It is dialogue between parent's that keep us on our toes...

As far as treating medical issues without a DAN! - good luck on that one. Unless you have an extremely enlightened mainstream pediatrician that is not going to happen. I tried to get two of them to listen to me that she was miserable and they did not.

Her DAN! has also never promised me that she can cure Natalie; she even made me sign something stating just that - that we can run some tests and try some things but there is no guarantee that Nat will get better.

Yes Natalie is still autistic. But I absolutely believe that the treatments her DAN! recommended are the reason she was finally able to potty-train. I never realized that digging in her behind constantly and smearing her poop on the carpet were signs of distress.

We also likely will try chelation in a few months, and before anyone jumps on me over that one, the minute you take her off antifungals her yeast infection returns with a horrible vengeance. That means something is likely affecting her immune system which is making it impossible for her body to regulate the yeast. She did test out as possibly having a problem with lead and it makes sense as my hubby works with lead.

There is a mom on the babycenter message board that I am posting on who is chelating her son and he is dramatically improving. Guess what she just recently found out? That the millitary housing she lived in when her son was a baby and began exhibiting his first symptoms has a lead problem. In fact, she has contacted several of her old neighbors and guess what? There are three other confirmed cases of lead poisoning amongst the children who used to live there. There is ADHD and learning disabilities in many of the children who used to live there.

And guess what? As she is chelating, a lot of the symptoms that got her son diagnosed as "autistic" are disappearing. Will he always BE autistic? Likely so, but she did say she can also see him completely losing his label someday. She could not say that a year ago. And this is a woman who hates Jenny McCarthy and was highly skeptical of DAN! as there seems to be a strong genetic component in her family (there are several cases of Asperger's amongst her neices, nephews, and an uncle) so she started the whole DAN! thing with a grain of salt. Now she is glad she gave it a chance.

And now she is putting up with the same things that the rest of us "biomed moms" put up with - being told that she does not "love her son for himself", that she is "abusing him" that she has "fallen prey to quacks" Hey, this lady ran the exact same lead test that her DAN! did through the military base lab and it said the same thing.

This is honestly why some of us are so angry. No one can deny that our children have a lot of symptoms that at the very least seem to aggravate their conditions. Autism is diagnosed by a set of behaviors alone; there is no blood tests (other than a chromosome test) that are run. How many of these children are suffering from a misdiagnosis?

And my daughter was not "improving with time" by the way. If your children did that, you are very blessed. I waited and waited for her to get better and she was not getting better, she was only getting worse. She was deteriorating before my eyes. She became so hyperactive that all she did all day when she was awake was move around. She flung her one-month-old brother out of his crib last fall and landed him in the hospital with a skull fracture. We got investigated by CPS over it. I was giving her lots of love. I was "accepting her for who she was". As Dr. Phil would say (and I do not care for Dr. Phil) "How's that workin' for ya?" Well, it took an infant with a skull fracture to show me that "loving her for herself" just was not enough. And now I am getting berated for it. Gee, thanks for the support, people.

Point is, you do not know what anyone, whether they are a "biomed mom" or not has been through or why they are doing what they are doing. Give us a break.

"NavyMom, I got the same BS over the dairy and if it wasn't for Karyn Serrousi - BIO MED MOM - I would not have known to remove the dairy. The rashes, diahhrea, nightmares/terrors all stopped w/in 48hrs."

Farmwife, don't you know that your son grew out of all that on his own? It's called maturity. It had nothing to do with the voodoo medicine or naked rain dancing that you are engaging in. And you are only seeing the placebo effect.

You're just a Playboy-bunny wannabe, anti-vaccination Nazi who doesn't love her children for themselves. Shame on you. (I am just kidding, by the way!)